Monthly Archives: September 2016

Mourning the loss…

It’s often said to special needs parents that they need to mourn the loss of the child they thought they would have. The camp is split on this one. Some parents agree, some find it utterly distasteful and offensive. I’m in camp 1. I needed to mourn the loss of the healthy child I was expecting up to 35 weeks of pregnancy. I was almost there you see. All was going so well, the scans showed me that, so in my mind I was plaiting lovely long hair, shopping with a teenager, my best friend for life, and imagining myself as a Nanny. Not an old Nanny, a wise and loving one (I had great role models). But then BAM, my future was changed. I got on with it, I loved my baby girl and would do anything for her, and I still believed that she would progress well, other than mobility wise. When she was three I was starting to see that might not be the case and started counselling. I was told I was allowed to grieve. I was offended. In fact my words were ‘grieve? She didn’t die’. But my dreams did a little. Hearing that was enough. I cried a lot for the loss of my dreams. 

All that said, this doesn’t mean that those that remain ‘offended’ are wrong. We react based on who we are, our emotions and sensitivities. I would never try to change the mind of a fellow warrior parent. It’s an incredibly personal journey. 
Anyway, I grieved, not for long as I had asses to kick, and I felt much lighter for having permission to do so. 
Today I am mourning. Not the loss of dreams or people, but of the opportunity to have these shoes in my life. They appeared on my Facebook feed this morning. They are luscious. In my previous life I would have bought these shoes. I had the money. I had a place to wear them. I had clothes that went with them, and if I didn’t, I could buy some. I should point out that I’ve never been loaded, but I could afford high street, every now and then.

I seem spoilt?  I merely use this as an example of the changes in my life. It’s a sad fact that a lot of carers have to give up work or at the very least reduce their hours. I have many friends in this boat. Friends who had good careers, nurses, solicitors, managers, doctors. They have taken a huge pay cut. Carers are entitled to Carers Allowance of £60 a week. It’s not a great deal, but it is a benefit. It’s a misconception that carers get free dentistry, prescriptions, free early years nursery places from two, free school dinners. Some of course may if they are on other benefits but carers allowance on its own doesn’t trigger this. It’s also a fact that carers don’t have much of a social life! A trip to slimming class is equal to a night out! (But to be honest I miss my babies when I’m apart from them.)

So here I am, looking down at my tatty sandals, mourning the loss and allowing myself that indulgence. One day my pretties, one day …….


When occasional becomes the norm…

When Aine was first diagnosed with epilepsy she was having a handful of seizures a year. It seemed to be that she would have a virus or infection and this would cause seizures.

In 2013 that changed. We started to question if it was illness causing seizures or seizures causing illness. As time has gone on we have accepted it is the latter.
Lying in bed with her today, after another seizure, I started to think about how occasional occurrences can become the norm when you have a child with ongoing medical needs. 
This change in seizure activity, influenced a new norm; Aine’s need for company. She used to be comfortable on her own. She would ask to go to bed and watch TV, she would happily play whilst I pottered around her and she used to walk through the doors at school without so much as a backward glance. 
Of course, on occasions, she would sleep in with me, or cling to me at school. But now those things are the norm. If I am out of her sight, she shouts me. ‘Mum, where are you?’, ‘mum, can I make you jump?’, ‘mum, what time is it?’ She needs reassurance that I’m there. I lie on the way to school when she asks ‘will you stay?’ ‘Yes, ok Aine, I’ll stay!’ I then sneak out of school after drop off like an illusionist. 
This has a huge impact on bedtime. I’ve blogged before about anxiety at night time. How during times of seizure activity Aine would want to sleep with me or MrM. Now it’s the norm. Trying to get her to sleep alone causes so much anxiety, we’ve stopped trying.
Occasionally I would drive her to school, if I felt she was at risk of a seizure, I would take and collect her. Now it’s the norm. 
Occasionally she would reject her food, send back half eaten meals or refuse completely. Now it’s the norm. 
But what remains, and what we have glimmers of throughout her toughest times, is our beautiful, sociable and brilliant shining star with a smile as broad as the Cheshire Cat.  At her best, she can light up the room, even when she’s off her game she still makes people smile as she asks them their name and if she can make them jump. I hold onto hope that one day soon we will find the right treatment for her, that the norms will become the occasionals.